... better she looked the worse she felt ... so, we really ARE our parents :-)

June 14, 2004

Subj: Looking healthy ... almost super healthy ... Grrrrrr :-S

Hi all,

A new situation. My slow weight loss over the last few months, has given me a

uniquely healthy look. So, the idea that I have < > wrong with me is

.... well, worse.

My situation now recalls to mind my EDS mother. Who I recall had a doctor

that noticed that the BETTER she looked the worse she felt. Well, in my case, I

feel okay but I am so depressed lately on top of the other problems. And my now

distant friends just presume I am on total disability for no reason. I hate

that. I have one friend that believes in my " strangeness " that that is because

she has some similiar symptoms.

When I try to explain things and me it gets worse. Unless the person has a

medical background and then they still usually have to go run and look up what I

have. In fact, no one understands me, unless I show then my actual BP

numbers. If they see the low numbers they are confused. If they see the high

numbers

they do not believe it. And, once again my stepmother, now 94 has given me up

again. She said she does not understand what I got. That she never heard of

EDS and is too old to learn. All she said two weeks ago was now that Bill is

gone I should come visit her for a while. But not to stay. She cannot understand

why I cannot travel. Well, a new method is in order. Maybe I can get my doctor

to state it is okay for me to travel with my low and high BP. Caro.

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